Well while we are preparing for Haven's 5th birthday tomorrow I thought I'd stop and share a few schedule updates. I am probably overly stressed....but I feel like a crazy woman! I have a million things to share with everyone but very little energy to type it out! I'm so happy my friends are able to come to Haven's birthday tomorrow - as she does not have any friends her age around here.
Here are the updates:
Levels have been great the last 3 visits to Oncology. So for right now we will stay on the same dose two times a day.
We leave for Disney next Tuesday, January 27, evening so Haven will have another level check on Tuesday morning
Audiology testing on Tuesday morning
Friday, January 30, we will go to a hospital in FL to have Haven's levels checked (chemo doesn't take a vacation)
Back at Johns Hopkins on February 4th for another level check
February 12th we will meet the Orthopedic Surgeon that will perform the surgery on Haven's back. He will exam the tumor on her shoulder blade and discuss with us how they will go about removing it.
March we will have another sleep study
March 26 we will have surgery on both eyes
March we will test Haven's blood gas levels and meet with Pulmonology again. This seems easy but when we found out today how they do it we decided she needed to be put to sleep.
I will get more info to everyone as soon as I can. Right now I am again covered in hives - I love it! Every 3 doctor phone calls I break out in to hives. It's amazing. Well I must get back to work on the house.
Love to all
m
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We are praying for Haven. We hope she is able to experience Disney thru Give Kids the World. We were there with our THEN 2 year old who was diagnosed in 2007 with Esthesioneuroblastoma. We have been able to arrest her wall to wall solid mass tumor in her head and she will now turn 4 in May. We would love to share our experience with you. Please call us anytime: 919-845-0337. You can read Meena's story on her website at http://www.caringbridge.org/visit/meenabali.
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The Bali Family